diagnosis

Today I want to write about something a bit different. So far, my method of writing about what it’s like to have Aspergers has been by interpreting situations that were confusing at the time in the light of what I now know about Aspergers. I’ve been analysing and interpreting my life, in the hopes of helping others with Aspergers understand their own lives, or the lives of those they know with Aspergers.

Today I want to write Aspergers from a different perspective. To write about what it’s like, as an adult in one’s thirties, to receive a diagnosis, to disclose it, and to thus suddenly have the label of ‘Asperger Syndrome’ and consequently ‘disabled’ attached to oneself.

It is a strange experience. A couple of weeks ago I gave a short presentation on ‘What it’s like to live with Aspergers’, as part of an autism awareness training thing that the NAS were doing. And when I was planning my presentation I realised that what the question really meant, for me, was simply ‘What is it like to be me?’ And then it was a question of differentiating which parts of me are different from ‘normal people’ and which parts are just parts of being human – which is quite an impossible task.

Some people are born with an obvious disability, and grow up knowing they’re disabled. Other people may have an accident at some point in their life, and then become disabled – with a clear differentiation of what life was like before and what it is like now. Neither of these apply to me. I’ve grown up being simply me. I’ve felt a bit weird, and found life confusing, and found other people hard to understand – but my understanding was simply that life is tough, and maybe tougher for some than for others. So I never understood these things in terms of me being disabled in any way. In my mind, disabled people were a category which didn’t include me.

I actually first read about Asperger Syndrome when I was about 19. It was just starting to get media attention as a form of autism. I read an article in the Times newspaper, and felt indignant. I knew it was describing me. I knew that some people didn’t like me being the way I am, and that they wanted me to be more sociable, just because they were sociable. I thought it was most egocentric of them to want everyone to be like them, and I was highly indignant that an even bigger ‘they’ had now decided (as I saw it) to define people who were different from them as having a ‘syndrome’.

So I dismissed the article with contempt and didn’t think about it any longer. At least not for several years. Then, as I worked in health care jobs and in schools, I came more in contact with the idea of autism and started to read about it. And I realised from what I read that I clearly had Asperger Syndrome. But it still didn’t mean anything to me – because although what I read described me perfectly, I didn’t actually have a diagnosis, and therefore the label didn’t apply to me. And it didn’t have to, because I didn’t need a diagnosis.

However, there came a point where I realised I actually did need a diagnosis. I’d gone back to college, and realised that it was very different from what it was like when I was 18. Partly because teaching styles are different, partly because rules are different, partly because of intense fluorescent lighting, and partly because I was doing a very different sort of degree from the one I did at 18. I found myself becoming unwell with sensory overload and stressed with confusion, but when I tried to ask lecturers to alter things a bit for me – such as to have one row of lighting turned off, and to put the powerpoints on the intranet ahead of time so I could read them beforehand, and to let me have regular appointments with them where I could ask questions to make sure I understand exactly what I was supposed to be doing – they were very unwilling, and saw me as being difficult and demanding. And so I got a diagnosis, got it approved by the NHS, and suddenly I was a disabled student, and I could get a needs assessment, and a disabled students allowance.

And in many ways it was great. The lecturers were more understanding of my needs, I was allowed to switch to part time attendance, they put powerpoints up ahead of time, I got a support worker who I could see every week to help me with organisation, and I got Irlen lenses and a laptop with software that makes the screen easier to read. All that was fantastic, and made a huge positive impact on my experience of college. I began to enjoy it, to understand what I was learning, to do consistently well in assignments and exams. I no longer felt constantly overloaded and exhausted. All that was wonderful.

But in other ways it was not quite so great. In smaller, less immediately noticeable ways, that sort of creep up on you. Although I’d known for ages that I’d had Aspergers, a diagnosis somehow makes it more real. Also, observing how the support I got made such a difference to me made me realise that actually, yes, I am kind of disabled. I didn’t know things could improve this much – and the improvement really highlights to me how bad things were before, even before I was studying. The amount I was struggling was not normal. And this makes me more aware of my weaknesses, my difficulties, my vulnerability. And that is a bit scary – especially when I think of the future, and how I will cope with old age, when I may not have the energy to maintain all my coping strategies.

Also, telling people I have Aspergers can be an odd experience. Quite a few people get a sympathetic look in their eyes – as if I’d told them I was dying or something! I do not want sympathy – I’m just trying to explain who I am and how my mind works, so people can understand me. The sympathy seems to create a ‘them and us’ feeling, which makes me a bit uncomfortable.

With people who’ve known me for years, such as family, then a different sort of issue arises. They’ve always known me as a non-disabled person (weird, yes, but not disabled) and I haven’t changed, so the conclusion that some of them draw is that clearly ‘Asperger Syndrome’ doesn’t really exist, because I’ve gone all these years without the label. Some see it as a potential ‘excuse’ – my dad told me quite openly that he didn’t want me to have the label of ‘Asperger Syndrome’ because I would use it as an excuse not to tidy my house. This quite bewildered me; I replied to him ‘Dad, in all these years that I haven’t had a diagnosis, my house has always been untidy. So, even if I did use it as an excuse, how is my label of Asperger Syndrome going to change anything?’

Then there are the people who have known me a little, and to whom I’ve always seemed quite ‘normal’ (I’m fairly good at faking ‘normality’ when I don’t know people well) so they refuse to believe I could possibly have Asperger Syndrome, because in their mind people with Asperger Syndrome sit in a corner and rock, or have a certain air about them that I don’t have.

And there are the people who say ‘Oh, what you are describing is normal – I get that too. Everyone gets it.’ I’m not quite sure what to make of that one – I mean, of course my experiences won’t be totally alien to non-autistic people, because we are all human beings and so we share the human experience, so it’s surely a matter of degree, and the fact that I have to rely more on certain mental processes because the others don’t work so well. Or are they saying that I am describing normality and pretending it’s a disorder? In which case, surely they’d have to write to the people who write up the DSM, as they are the ones who define disorders, not me.

Of course, not everyone responds in these ways. Many respond in a positive, open way, and want to learn more about Aspergers to understand me. A few, who already had quite a bit of experience with people on the autistic spectrum, have told me that they’d guessed that I had Aspergers, or that it doesn’t surprise them in the slightest. Everyone responds differently – and that itself can be quite nerve-wracking, because it’s hard to predict how people will respond, or whether I should tell them.

So, although in many ways getting a diagnosis has been a very positive experience, there is also something quite exhausting and disspiriting to be landed with a diagnosis when you’re well into your adult life, when you’ve already developed a whole host of strategies and behaviours to fake ‘normality’, and when people have known you for quite a while without this label attached to you. Particularly as Asperger Syndrome simply wasn’t around as a diagnosis until relatively recently, so it seems to many people to be a newfangled meaningless thing. They see it rather as I saw it when I first heard of it – that people have decided to invent a disorder to explain away people who are different. Except many see it, as my dad sees it, that people have invented a disorder to ‘excuse’ certain behaviours which would otherwise be unacceptable. Which I find rather daft, since I’ve always turned myself inside out trying to figure out what appropriate behaviour is and to imitate it. I make mistakes – but I’ve always made mistakes. It’s not like I suddently started making them because my diagnosis has given me an excuse. I’m making them for the same reason I always did – because I genuinely find it difficult to always understand what to do.

I guess I’ve used this entry to have a bit of a moan! But I wrote it because I realised that I was having a lot of conflicting feelings about my diagnosis, and I wanted to explain them – because it dawned on me that the experience of having Asperger Syndrome isn’t just about the traits of Aspergers, such as taking things literally, having difficulty with multitasking, having sensory sensitivity, etc. It can also be about the whole experience of having a label, how that label influences your self-image, how others respond to that label, the effect of others’ responses on you. And I imagine people with different labels can also relate to what I have written here, particularly labels to ‘invisible disabilities’ – because having Asperger Syndrome doesn’t make me an alien species! I am human, and I write about the human condition, and in particular how it is experienced by me, a person on the autistic spectrum.